Formerly House with No Steps and The Tipping Foundation

“I love my lip the way it is. I’ve never wanted to change it”

Belinda Downes is a language scientist and linguistics teacher, and also the proud owner of a rare 1971 model Bilateral Tessier Cleft.

Having a Voice

Having a Voice is an extract by Belinda Downes from Growing Up Disabled in Australia, edited by Carly Findlay OAM, published by Black Inc. Books, RRP $29.99.

We didn’t have social media when I was growing up. I was born in 1971, and for years I couldn’t even find out what my condition was called. I used a computer for the first time in my second-last year of high school, and didn’t own one until my second year of university. My 1000-word essays for uni had to be stored across two files, because in popular programs like Microsoft Word, each file could only hold a maximum of 500 words.

Back then, we found information a different way, in forms that were very hard to keep current and that only spoke about able-bodied experiences. I was told things were a particular way because they had always been that way; people in authority said so. The paper encyclopedia said so. Newspapers and television – the popular culture of the time – said so.

Popular culture said – and still says today – that people like me, born with a cleft face (a rare form of cleft lip and palate) are scary. We were the villains in TV shows and movies. These representations were not true, of course, but they meant that people in authority got used to hiding people like me, and what we had to say, from public spaces. In my younger life, many people sought to speak on my behalf.

“Popular culture said – and still says today – that people like me, born with a cleft face (a rare form of cleft lip and palate) are scary. We were the villains in TV shows and movies”

I know my own face better than anyone, but others have always had things to say about it. There was the time I was trying to get my first job, and I was instructed to register at a place that found jobs for people with disabilities. My resume was handed around without my knowledge or permission and I was ultimately compelled to take a job I knew my face couldn’t handle.

People still think that my disability is my facial scars. The scars itch sometimes, but my actual facial disability means I can’t see properly – and for this job, working the phones in a call centre, I couldn’t talk for more than a few hours a week before it seized up. I knew my face would not cope and I was right: after only a couple of weeks, I couldn’t speak at all and my face became badly infected. I ended up in the mailroom for the next few months while my contract played out. The job finished painfully, with me needing to have more facial surgery to fix the damage.

Years later, my boss from the call centre told me that I had left the role, she surmised, because I was shy and didn’t like the way I looked. But did you know that many people with scars on their faces actually like their faces – including their scars? That, anecdotally, many have better-than-average body image? I’ve always loved my face and its scars. I had to leave that job because the work was physically damaging. Both in my recruitment and in the reasons for my departure, I wasn’t consulted.

I recently learnt that my old boss had been told I was leaving their business because I lacked confidence. I was shocked that I’d been so misrepresented – more people talking behind my back and making decisions for me without my consent or knowledge, based on unfounded assumptions. When I did have the operation to repair the damage, it solved a mystery in my life, one that was to help me develop my own voice and career.

 

 

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I’ve had about twenty-five operations in my life, which actually isn’t that many. As a very young child I lived in Sydney, and my mum would take me a couple of suburbs away for routine check-ups to make sure my face was going okay. Then we left Sydney and my dad bought a small business on the mid-north coast of New South Wales. I loved it there. I was even the girl school captain in my final year – because I was the only girl in that year at our tiny school.

One day, as I was preparing my books and schoolbag for high school (I was so excited to finally be going), Mum came into my room and explained to me (she didn’t ask) that someone in the education department in Sydney had decided that I would have to repeat Grade 6 in another school. I had ‘low self-esteem’ and ‘low socialisation’, it had been decreed. Nobody asked me. I felt disappointed and angry. Why was no-one interested in what I felt or wanted? I’ve never had low self-esteem. Although many of my peers at the new school became friends that I still have to this day, that doesn’t make it right that I wasn’t asked.

“I have an incomplete Manchester-repaired upper lip – it looks like a little lump under my nose. I’ve always loved it; it’s always been a part of me, part of my face, of my identity”

Throughout this time I kept having operations. Much of the surgery had a ‘let’s see if this works’ kind of approach. There was a prevailing belief that scarred faces are bad faces, and many people, including surgeons, got their ideas about scars from popular culture, not from people with scars themselves. As with the operations earlier in my childhood, again I wasn’t asked; it was just decreed that I would be going to Sydney – now a whole-day trip from where we lived – and I was expected to acquiesce.

One time Mum told me, out of the blue, ‘We’re going to Sydney to see your surgeon. He wants to see you.’ Just a check-up, I assumed. But I would remember this particular conversation with my craniofacial surgeon, when I was fifteen, forever.

‘So you want to get your lip fixed?’ After a six-hour-plus drive, we’d arrived in his office in Sydney, and he’d gone straight to the point.

‘No!’ I said quickly, not needing to think about it. It was the first I’d heard of this idea.

I have an incomplete Manchester-repaired upper lip – it looks like a little lump under my nose. I’ve always loved it; it’s always been a part of me, part of my face, of my identity.

This was thirty-two years ago, but I can still clearly remember the puzzled look on my surgeon’s face. ‘But you were adamant that you wanted it done,’ he said, sounding confused.

As I’ve said, I didn’t often get a say in what happened to me – but here I had an in, and I was resolute that I was going to keep my lip the way it was. As great as my surgeon was, he wasn’t going to take part of my face away from me. ‘But I love my lip the way it is. I’ve never wanted to change it.’ I stood my ground.

In the back of my mind I was conscious that it was a big deal to come to Sydney – the long drive, considerable planning, my surgeon’s precious time. ‘But, but,’ he said, blinking, ‘you were absolutely adamant that you wanted your lip fixed.’ Now both the surgeon and I were confused, because I’d never spoken to my mum about ‘fixing’ my lip.

It didn’t need fixing. ‘Nope, never.’ I stood my ground, again, knowing I was undermining the authority of my surgeon and my mum, and that all of this could come crashing down on me at any moment if Mum signed the paperwork, because I was still a minor. Then my surgeon said something that to this day reminds me to always speak up for myself. I didn’t realise it then, but it was a very important piece of a bigger puzzle. ‘But your mum said you were adamant you wanted your lip fixed.’

We looked at Mum. She didn’t say anything, but both my surgeon and I knew something wasn’t right. A victory had occurred. The surgeon had heard me – he’d heard my voice and my wishes. I still have the incomplete Manchester lip repair to this day, and I still love it. As we left the surgeon’s rooms and headed home, I wondered why she’d done that, my mother, but I wasn’t game to ask.

Over the ensuing years, Mum unfortunately developed a poker-machine gambling addiction – partly because she was in pain from not being able to use her own voice as a child. I only knew about this from small, occasional comments; she’d get angry if we asked anything else about it. She mentioned that as a child she’d be hit if she ‘backtalked’ (I read that as speaking up appropriately), and that she was not listened to. Gambling addictions cost not only a lot of money. Our mother lost a lot of time from her life and relationships.

“I’m happy to say that apart from a bit of teasing when I repeated Grade 6, I wasn’t bullied in high school”

It was tough for me too. I couldn’t help her, and increasingly she ignored me, just as my own voice was becoming stronger. The day I turned eighteen, she took me to the pokies, hoping that I might join her, and validate the addiction. Poker-machine rooms are designed to numb people’s minds and personalities. There’s dim lighting, no view to the outside world, the club serves you drinks and there are no clocks to tell you how much time you’re wasting. I went because Mum invited me but I complained incessantly, so she never invited me again, although I often had to go in there to remind her to come home in the evenings after school. We lost our house.

As I grew up, other older people helped me in different ways. I still appreciate those people. I left school in the late 1980s, and I’m happy to say that apart from a bit of teasing when I repeated Grade 6, I wasn’t bullied in high school.

It came as a huge, confusing surprise many years later, while I was planning the operation to fix the damage caused by the unsuitable call-centre work, that Mum contacted me. She wanted to help. I was living on my own in Newcastle at the time, and she offered a place for me to recover on the mid-north coast; and even though I was now twenty-nine, she would come to Sydney to look after me straight after the operation. I was having surgery to fix my bottom eyelids.

I did need help, so although I hadn’t seen her in a few years, I said yes. The day of the operation came. Mum was near, but not quite with me, hovering around the staff, doing the paperwork; she hadn’t really asked me anything, just busied herself doing ‘things’. As far as she was concerned, it seems, I still had no voice. But this was the year 2000 and I was twenty-nine. Things had shifted.

The first indication something was up came when the nurse asked me to sign a consent form. I was an adult, after all. She ran through the procedure and its risks, asking me if I understood or had any questions.

No questions from me – it was a clear procedure that I’d discussed with my surgeon. It needed to be done. It was the reversal of an operation I’d had, aged seventeen, which Mum had manipulated the surgeon and I into.

But the nurse had a question: Mum had been lingering outside my hospital room, and all the nurses on the ward knew who she was, but now she was nowhere to be seen. Where was she? She was meant to take me to her place afterwards to recover. Was she okay?

After a frantic search over a few hours (we didn’t have mobile phones at that time), they eventually found her. She was at home, up the coast, a six-hour drive from the hospital in Sydney where I was about to have surgery.

Sitting there on the ward, waiting to be taken to theatre, an enormous realisation struck me; various pieces of a lifelong puzzle finally began fitting together. My mother had been hanging around the ward to get a copy of the medical insurance invoice. She had been unable to, and now she was gone.

“I’m a linguist, Mum . . . I teach teachers how to help kids find their voice”

Before medical administration was fully digitalised, we would take my surgical paperwork to the insurer to get cash for the hospital bill. But now not only was the consent form signed by me (not Mum), but also the form went directly to the insurer to pay the bill, online. Mum had taken hospital invoices and leant on friends and relatives for financial support. For many years she had used my surgeries to bankroll her gambling addiction. Why did my mother run away?

There was no invoice, no paper bill, for her to take with her.

Later, my relatives told me of the funds they had given her upon seeing my medical bills. She had been lying to everyone about me, talking behind my back, not allowing me to talk to them. Because she had no sense of herself as a person, she saw me as just a means to earn money. Friends and relatives were manipulated by her stories: ‘If you loved me, you’d help me help my daughter.’ Every operation, necessary or not, was used for this purpose.

Complicating the situation was that not even the surgeons knew what was necessary, my condition is so rare condition. But I loved my face then, and I still love it. It’s my mother’s betrayal that has had the biggest impact on my life, not my scars.

Fortunately, Dad came to get me from the hospital and gave me a place to recover. He even got mashed prawns, my favourite recovery food.

Mum died in 2009, after a short illness. The very last thing she did was apologise to me on the phone from her hospital bed in central New South Wales. We hadn’t spoken to one another since just before the operation, nine years earlier. While we talked, she asked what I did for a living. ‘I’m a linguist, Mum . . . I teach teachers how to help kids find their voice.’

Bio: Belinda Downes is a language scientist and linguistics teacher who can be found via a quick internet search for ‘Coffee with Belinda Downes’ and occasionally on radio and television. She will never have too many Moleskine notebooks. Belinda is also the proud owner of a rare 1971 model Bilateral Tessier Cleft.

Credit:

This is an extract from Growing Up Disabled in Australia, edited by Carly Findlay OAM, published by Black Inc. Books, RRP $29.99, and is available where all good books are sold.